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远程医疗框架在 COVID-19 封锁期间为雷特综合征患者提供物理治疗支持的初步研究。

A Pilot Study Delivering Physiotherapy Support for Rett Syndrome Using a Telehealth Framework Suitable for COVID-19 Lockdown.

机构信息

Department of Physical Therapy, Medical Science Faculty, Ariel University, Ariel, Israel.

Telethon Kids Institute, the University of Western Australia, Perth, Australia.

出版信息

Dev Neurorehabil. 2021 Aug;24(6):429-434. doi: 10.1080/17518423.2021.1914762. Epub 2021 Apr 15.

Abstract

: Rett syndrome (RTT) is a genetically caused neurodevelopmental disorder associated with severe disability. We assessed the feasibility of a telehealth program supporting gross motor skills in RTT.: Five girls with RTT were assessed and a home-based exercise program developed in response to functional goals. Families then participated in monthly Skype sessions for 6 months, guided by a physiotherapist to monitor progress and adjust the program as necessary. Goal Attainment Scaling was used to evaluate progress and a parental satisfaction questionnaire was administered.: Four goals were established for each participant and progress was greater than would be expected in 16 of 20 goals. Parents evaluated the program as feasible and useful for their daughters.: A telehealth model of home-based intervention supported individuals with RTT to achieve gross motor skills and was found to be feasible. This model is important at present times during COVID-19 outbreak and lockdown.

摘要

雷特综合征(RTT)是一种与严重残疾相关的遗传性神经发育障碍。我们评估了远程医疗项目在支持 RTT 粗大运动技能方面的可行性。

对五名雷特综合征女孩进行了评估,并根据功能目标制定了家庭运动计划。随后,这些家庭参加了为期 6 个月的 Skype 每月会议,由一名物理治疗师指导,以监测进展情况并根据需要调整计划。采用目标达成量表来评估进展情况,并进行了家长满意度问卷调查。

为每位参与者确定了四个目标,其中 20 个目标中有 16 个取得的进展超过预期。家长们评估该项目对他们的女儿来说是可行且有用的。

基于家庭的远程医疗干预模式支持 RTT 患者获得粗大运动技能,且被证实是可行的。在当前 COVID-19 爆发和封锁期间,这种模式非常重要。

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